Splish Splash…

No, I’m not talking about bath time…

Yesterday I was doing housework in our bedroom, when I heard a strange noise.  I listened again and realised it was coming from the ensuite (where Harry was playing).  Very quickly the cogs started turning and I realised that there is only one place in the ensuite containing water that Harry can access…  Yes – he was splashing the water in the toilet bowl.  To make it worse, he had dropped his dummy in there, luckily he didn’t manage to get it back out!

Oh well, I guess that is another “first” to cross off our list – and toilet locks to go onto our shopping list!

 

Humbled

A quick personal update…

I spent half of this week at the children’s hospital with Harry, due to the increasing number of seizures he was experiencing (roughly 10 to 20 per day).  These seizures cause Harry to go stiff and fall over, usually with a big thud as his head hits the ground.

In our hospital room there were 5 other children.  Three of the five were wheelchair-bound, two of whom were severely disabled.  To be honest, I was a bit embarrassed to call myself a special needs parent – my job is not nearly as tough as what was required of their parents.  I was honestly touched and humbled by the warmth and friendship shown to me by these wonderful parents.

Harry now has to wear a helmet until the seizures are under control, and we have a new drug regime to try, so fingers crossed it all goes well.  To the mum’s who took me under their wing – thank you, it is truly appreciated.

 

Welcome to Holland

 

Welcome to Holland is a short piece written by Emily Kingsley, explaining for those who have not experienced it, what it is like to have a child with a disability. It was once given to me by those “in the know”, and I have in turn passed it on to others…  

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

 

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland

.

 

Five things NOT to say to a special needs parent…

It can be difficult knowing what to say to a parent of a special need child.  Often people are scared to come right out and ask questions, for fear of upsetting or offending – but often what they say instead is far worse, even when said with the very best of intentions…

There are a number of things that are repeatedly said by well intentioned friends, family members, and strangers, which are not particularly well received when it is YOUR child they are talking about:

1. “I know this child who…”  this almost always is a story about a child with no adverse medical problems, who was a little late to develop – being compared with your child, who has a medical diagnosis, and a real reason why they may never reach some of their milestones.
2. “You’re lucky that…”  this is often a comparison to a something perceived as worse, but in reality is not anywhere near what you have experienced “.  For example, I recently met a mum whose son was born healthy, and at 6 months developed severe epilepsy – the seizures caused brain damage and severe muscle spasticity.   A family friend once said to her, “gee, you’re lucky he didn’t have febrile convulsions, my daughter had them once and those things are really scary”.
3. “You’re lucky that…”  Yes, there are two of these!  The second is the comparison to someone worse off than your child.  If you ever say to someone “gee you’re lucky that he didn’t end up with [insert condition]” or “your lucky she’s not as bad as [insert example of worse off child]”, please remember that somewhere, there is a child with that condition, and while it is normal to be grateful things are not “worse”, please have respect for those that have a greater struggle.
4. “That kid needs some proper discipline.”  In some cases, that might be fair enough to say – however, most of the time, we are not in a position to judge others.  A child having a tantrum at the supermarket may well just be a normal kid who didn’t get to put what they wanted in the trolley.  They may also be a special needs child having a sensory overload, and not able to cope.  This is not discipline related, and really, do you honestly think the parent doesn’t realise their child is screaming in the middle of the supermarket?  Are the dirty looks and covered ears really necessary?
5. “There’s nothing wrong with him/her”.  I touched on this in a previous post.  Parents spend a lot of time worrying about their child’s development, and their future.  Telling a person who has spent countless days, weeks, months and maybe even years trying to get a diagnosis for their child, and then spending their waking hours trying to overcome that diagnosis, that there is nothing wrong, is NOT helpful.  It is belittling, and honestly, it is like getting a slap in the face.

So, what should you say?  If you don’t know anything about the diagnosis of the child – ask.  Instead of saying, “he looks okay, surely there’s nothing wrong with him”, try saying, “I don’t know much about cerebral palsy (or ASD, or whatever the diagnosis is), could you tell me about it, and how it affects your child”.  Or perhaps say, “are you okay, is there anything I can do to help?”.   Or you could be really crazy, and say “what’s his name, what is his favourite toy, game, colour etc”.

 

“My husband doesn’t understand…”

Yes, you are right.  Your husband (or whoever the primary bread winner is) doesn’t understand.  The simple fact is, that he can’t possibly understand – because he is not experiencing life in your shoes.  Nor are you experiencing life in his shoes.

It took me a long time to figure this one out.  Maybe others out there cotton on to things faster than I do!  Being the primary carer of a special needs child is not only hard work, but it can be very lonely.  Especially when the one person who is meant to be your key support doesn’t understand what it is like to be “you”.

It is wonderful to be able to be there with your child every step of the way, to help them learn and grow.  Don’t get me wrong, I love that I can stay home and be a full time mummy to my son.  My days consist of watching Harry play (AKA taking mental notes of things he likes, dislikes, and any new interests or skills so I can relay them to his therapists), playing with him (AKA at home speech, OT and phsyio programmes incorporated into play), taking him to therapist appointments, taking him to doctor appointments, attending playgroup (with other special needs children), attending mothers group (“normal” kids), counting and recording how many seizures he has in a day, and attending various other appointments.  The difficulty with this is that my days are completely focussed on Harry, and most relate to therapy of some description.  He is constantly either doing some sort of “special needs” therapy, or socialising in “special needs” circles – and when he is with “normally developing children” it is blatantly obvious that he is miles behind them in all aspects of development.  So, when I get upset and my husband tells me to “stop comparing Harry” and “stop focussing on his disabilities”, I say “you don’t understand”.  And he doesn’t.  He can’t possibly.

“If you have a tray of pink cupcakes and one green cupcake – seeing or noticing that one is green is not “comparing” it to the rest, it is green, and the others are pink.  It is an observation, and you cannot “pretend” that the green one is pink.”

Having your main support person, who as the other parent in the family you would expect to be going through the same thing as you, not understand why you are upset or what you are going through, can leave you feeling completely alone.  It can also make you question yourself – am I going crazy, am I too negative, am I focussing on things too much…??  Other than a complete role reversal, there is not an easy fix to this problem – explain to your husband why you feel the way you do, he doesn’t have to experience it, or even understand it, just being aware of how you feel is a good start.  Once you start to understand that it is not his fault that he doesn’t feel the same way as you, or have to endure the hard parts of your day, while you won’t suddenly stop feeling alone, you will eventually stop blaming him for not understanding, and that is a great place to start.

It must be remembered that your husband is also playing an important part in your, and your child’s life.  He is going to work every day to earn the money – and money is a necessity!  He may miss out on seeing your child’s first steps, or hearing the first word.  It may be more difficult for him to develop a close relationship, and when your child cries and only wants “Mummy”, surely that too is heartbreaking.

 

“He will be fine, look at him – there is nothing wrong with him…”

To any “newbies out there” sorry to tell you this, but you will get this all the time. “There is nothing wrong with him, awww look at him, he’ll be fine”.  It would seem that advising that “my son has brain damage and has been diagnosed with cerebral palsy and the left side of his body doesn’t work properly” means something different to others than it does to me (and to my son!).  People say these things because they want to try to make it not seem so bad, and they think they are comforting you. To those people who are guilty of this, please know – in reality this can make a person angry and even more upset than they previously were, because it makes you feel like you are perceived as negative and focussing on the disability. It also makes you feel like all the stress and worry that you feel every second of every day, in their eyes, isn’t warranted. These people may try very hard, but often they simply don’t understand. That is not their fault, they are not in your shoes, and they have not experienced what you have – however a little thoughtful consideration before speaking wouldn’t go amiss…

The other thing friends, family – and strangers – will do, is compare your child to some other child that will have had something completely different going on – for example, my son has been compared to kids that were simply slow to walk – who eventually did walk and had no reason other than developing a little late, and they say “he’ll do it soon, the kid I knew didn’t walk til he was two, but one day he did it and now he runs everywhere”. Yes, Harry hopefully will walk, with the help of a plastic boot, walking frame, and three years of physio, but he has a brain injury and it causes his muscles to not work the way they should, and he won’t miraculously “come good” like that other kid. Explaining it to them doesn’t make them understand, it just makes them think I am negative and pessimistic.

There is a lot more to deal with (emotionally) when you have a special needs child than just helping the child. You will work your backside off to do all the stuff he needs, and you will feel worn out from it – and then you will get some well-meaning person tell you there is nothing wrong. It will drive you insane. You need to know the facts and you need to be realistic if you are to help him. Outsiders, even close family often don’t really understand this.

I have learnt that it is very important to tell those people who are close to you if and when certain things upset you. Explain it clearly, and even if they don’t agree, at least then they know. Because you will get this over and over for a long time, and you need to make sure that your “support people” know how to support you

 

Hmmm… Where to start…

As this is my first blog, I guess the best place to start is the beginning…

Following the birth of my son in 2010 I have experienced every emotion imaginable.  From wondering if I would ever smile again, to laughter, tears, sadness, joy, tears, loneliness, anger, more tears (yes, there have been many tears), frustration, to name a few.  However, the two most surprising aspects so far have been firstly, the lack of direction and information – not knowing how to find and access what seemed like such vital information to help my son get started in his journey of life, and secondly, the varying levels of understanding to a situation such as ours, even within the family unit – but more about that later!

Our story began at 10.23 am on 24 January, 2010 (Sunday).  When Harry (Harrison) was born he was pronounced fit and healthy, and we were happy, proud parents – like all parents should be.  We enjoyed cuddles with our precious little bundle, and he mostly just slept.  That afternoon when the nurse came to check on him he was a little cold.  After re-taking Harry’s temperature with two further thermometers and deciding that the low reading was in fact not a result of faulty batteries, he was whisked away to the special care nursery for closer observation.

It was soon noticed that Harry was having periods of apnoea – and would stop breathing.  He was put on a “C-PAP” machine, to assist his little lungs, and keep his oxygen levels at a safe level.  When we were allowed to visit Harry in the nursery, we were surprised to be given a photograph of him.  The nurse explained that she didn’t know if we had a photo of him yet – my first thought was “is this so we have a photo of him while he is ‘alive’ – could he die?”.  We stayed with Harry as long as we could and then went back to our room in the hospital ward.

On the third day, Harry had been taken off the C-PAP machine and seemed to be breathing a little better, and we finally received some news about his condition.  Our paediatrician told us that Harry was experiencing “seizure activity” and that they were going to give him an anticonvulsant medicine to manage the seizures while the continued with tests to find out the cause.  Harry reacted badly to the medicine causing him to have more frequent and longer periods of apnoea, resulting in him being transferred to another hospital where they had a neonatal intensive care unit, where he could be ventilated.

That night Harry underwent further tests, including more blood and urine tests, and a lumbar puncture, and the following day an MRI, EEG and ECG.  We were told late that afternoon by the paediatrician that the neurologist was unavailable and he had not been able to discuss the findings of the MRI with him, but that it was clear that Harry had suffered a severe stroke within the past few days and that he had brain damage.  We didn’t know what to do, we broke down, and eventually went home, knowing only that our tiny little boy was in intensive care and had brain damage.

On Friday (day 5) we met with the neurologist and he showed us a series of pictures of Harry’s brain, while he explained that the stroke had caused a complete blockage of the right middle cerebral artery – the main blood supply to the right side of Harry’s brain.  We were told that the next months would be a whole lot of “wait and see”, but that it was likely that Harry would be diagnosed with cerebral palsy, and that it would likely affect movement of his left side, but may also impact cognitive function, speech etc.

I cried every day for the first two months, at least every other day for the first six months, and at least once a week for the first 18 months.  These were not post-natal depression tears of not coping, they were tears of fear, frustration, and loss.  I was constantly worried about how Harry would develop, what things he would miss out on, would he make friends, and worst of all, would he get picked on because he was different.

Fast forward…

Harry is now just over two years old.  He does make sounds, but is unable to speak or say words with context or meaning.  He cannot yet walk, and he never crawled.  He wears an AFO (ankle-foot orthosis – plastic boot) on his left leg and a smaller plastic boot (inside his shoe) on his right leg.  Harry also suffers regular myoclonic seizures, as well as tonic seizures (where he goes stiff and falls down) which we are struggling to control, and have been trialling different medicine combinations in an attempt to get them under control.

We are immensely proud of Harry – while he has not met many of the milestones achieved by his peers, he has worked extremely hard to get to where he is.  He is a very determined little boy.

::::::::::::::::::::::::::::::::::::::::

My son has cerebral palsy, a hemianiopia (vision impairment), and epilepsy – and I love him to bits.  Many special needs kids, like Harry, must climb mountains to achieve their goals, when normally developing children must only climb hills…  Welcome to CP Mountain Climbers!